Happy 18th birthday Hayley!

Hayley bids farewell to childhood and continues along the path to a future full of hope and ambitions…

Monday evening, at the computer

“Seems funny I won’t be reading about my life anymore…” Hayley looks sad but then her face lights up. “But hey I’ll be able to drink alcohol!”

Yes, Hayley turns 18 this month and as she says goodbye officially to childhood, we say farewell to the regular blog. We know the National Deaf Children’s Society will be there for us for a few years yet, but our biggest battles have been fought.

Number 18 Candles Cake

Looking back at the first blogs seven years ago I’m blown away by how far we’ve come. Hayley was in primary school and we were just beginning our journey to get her on the road to success and wellbeing in a hearing world.

Realising what we were up against after she was diagnosed as deaf, what her needs were, how they’d be supported (or most often not). Learning how we’d have to battle for every scrap of help, but how the National Deaf Children’s Society would be by our side, including often literally with our children and families’ support officer in school meetings, to help get what Hayley needed.

Learning about everything, from how to re-tube Hayley’s hearing aids – after hours of me trying to push (!) the new tube in – to how to apply for special exam arrangements when she reached GCSE year. Discovering she could be entitled to a special educational needs (SEN) statement and getting expert help from the National Deaf Children’s Society to appeal.

I remember how exhausting and frustrating primary school was for a child spending every minute intensely straining to hear what’s being said, not just by teachers but in the noisy chaos of the playground. The tantrums at home after a long day coping, headaches from a noisy world amplified by hearing aids – a world that won’t take the time to make sure Hayley’s heard, or to wait for her to get her words out when she stumbles, her processing skills and other deaf-related issues, like word retrieval difficulties, halting her, tripping her up.

The world moving on without her – her being just that step behind and being left out because of it. The loneliness, tears and isolation, the constant struggle socially.

I remember the high hopes of an excited 11-year-old Hayley starting secondary school thinking everything would be amazing, but finding it harder than ever – the challenges of navigating around a huge site, never quite knowing where she should be (she once sat through a French lesson thinking it was German!).

Being ostracised and bullied, sobbing every night, begging to move schools. More support from the National Deaf Children’s Society encouraging the special educational needs coordinator (SENCO) to help find strategies to improve things.

Being diagnosed with autism, then later undiagnosed, no resolution to her difficulties, perhaps just a mix of deaf-related issues.

Being permanently at war with useless SENCOs, battling for more support in the classroom. Getting information from the National Deaf Children’s Society explaining about rights to extra exam time, presenting it to the SENCO who’d refused Hayley extra time.

Remembering the time her consultant finally said, after countless operations including three mastoidectomies to rid her of cholesteatomas in both ears, that she’d now only need an annual check-up – yay! And Hayley asking would she always have to wear hearing aids and him saying “Yes Hayley, but they’re part of you, part of who you are”. I could kiss that man.

Then there were National Deaf Children’s Society residential events we’d collect Hayley from and find her apparently inches taller, self-esteem boosted, full of the fantastic time they’d had trying new things, making friends.

Watching Hayley’s love of cooking develop, winning young chef contests, gaining confidence and a direction.

Last September, fresh beginnings at catering college. Not wanting to put her hair up because her new classmates would see her hearing aids, then going for it anyway.

The National Deaf Children’s Society helped us through it all, helped Hayley find herself, believe in herself. She recently shared a Facebook post which said: ‘If I had the choice I would choose to be deaf’. She’s come such a long way from the frustrated meltdowns – “hate my hearing aids, hate my stupid ears”.

Hayley talks of volunteering for the National Deaf Children’s Society, to help support other deaf children to blossom into strong, independent young people who can hold their heads high and embrace life, their future, just like any other young person. Just like Hayley has.

I’ll be honest, I’m feeling more than a little emotional as I write this. I’ll probably hit the alcohol with as much enthusiasm as Hayley will!

But right now I want to say goodbye to the regular blog (though we might post an occasional update) and thank you to the National Deaf Children’s Society for helping to fight Hayley’s battles so far, and for all they do to help deaf children and young people. The world, and their world, is a better place for it.

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Can Hayley stand the heat of the kitchen?

Hayley has a new job and is experiencing the real world of work – but can she stand the heat of the kitchen?

Sunday night, waiting in the car

Here she comes, emerging from the dim light cast from the pub windows and climbing into the car. She’s happy, cheeks flushed from a hectic night in the kitchen, looking very professional in her black mandarin collar uniform shirt.

Hayley’s got a new job and she’s in her element. She’s a part-time kitchen assistant in a fine dining pub. On busy nights it’s pot washing and clearing up, on quiet nights the two chefs let her help with the food preparation so she can learn her trade. It’s a great job to go with her college course in hospitality and catering; the students are expected to find a part-time job to build their experience and supplement their college skills. The pay’s not bad either, and the girl is rather partial to earning money.

Teacher Helping Students Training To Work In Catering

I have wondered before now whether Hayley’s chosen career in catering will pose problems. A commercial kitchen seems to be a very noisy, hectic place with challenging acoustics: pots and pans clattering, food preparation equipment making a racket, blending, mixing and chopping, cooking food hissing, bubbling and crackling, and stressed staff under pressure, too busy to think about deaf awareness. There’s likely to be no time in the heat of the moment to make sure they turn to face a colleague with hearing loss in order for them to be able to lip-read.

It’s something that’s been an undercurrent of concern but of course I’ve never voiced my worries to Hayley. Where there’s a will there’s a way and I’m sure there are many deaf chefs and other kitchen staff who manage really well.

Hayley’s been in the job for two months now and it doesn’t seem to have become a problem. It’s a very small kitchen, though a very busy one, so that probably helps. And the chefs are kind, friendly and patient and so far they’re really pleased with Hayley’s progress. She’s willing to learn and enthusiastically gets on with all the tasks they set her. And she seems to pass muster when the kitchen’s at its frenzied peak, when the food orders hit the fan and the chips are down, so to speak.

Though Hayley did surprise me when she came home shocked by some of the ripe language and outbursts that fill the kitchen when the going gets hot.

“Hayley, have you really never watched any of the chef programmes on the telly?” I ask her.

“Well yes but that’s on the telly,” says Hayley. “And the chefs are really nice so I didn’t expect it.” Not that she’s bothered, just surprised; she finds it quite funny. And none of it has been directed at her so far, so that’s a bonus!

Hayley’s loving being in the real world of work and she knows what to do if she can’t stand the heat – but I don’t think that’s going to be a problem.

Please note image is not of Hayley

Hayley gives as good as she gets!

Hayley’s growing up and developing a thicker skin. Increased confidence from being at college and plenty of stick from her brothers over the years have matured her nicely, making sense of humour failure much more a thing of the past.

Friday night, in the kitchen…

“Are you completely mad?” A question for Hayley from younger brother Harry, who’s exchanging ‘d’oh!’ looks with older brother Lee, before both of them double over laughing. Hayley is of course the butt of their humour. That’s brothers for you, deaf sister or not.

“You really think there’s a horse in the fridge?” splutters Lee. Hayley shoots them each a glare, but it’s only friendly fire. She’s too busy getting ready for a Christmas party with her college mates to care about their mickey-taking.

Teenage-girl-smiling

“Well that’s what it sounded like,” she says, with dignity and a withering look, taking advantage of their incapacity by whipping a big slice of pizza out of their boys’ night in takeaway box.

Someone had just said something about the sauce being in the fridge and Hayley thought they said horse. Hayley shrugs it off. She’s come a long way. In some ways I think her deafness and the challenges that arise from it have been character forming, toughened her up some, and that’s no bad thing. Her brothers of course should know better. Deafness doesn’t make you stupid or crazy, it just means you can’t hear accurately and it’s not funny.

But the problem is, sometimes the resulting absurdity is funny, even though I’m certain that’s not politically correct. Luckily Hayley sees it that way too. Being able to laugh at yourself has to be one of the best defences, as well as an appealing trait. And it’s all good practice for the idiots you meet in this life.

I recently had a jarringly unfunny incident while at the opticians. In conversation it came up that I write this blog for NDCS. The professional’s witty riposte? “Pardon?!” followed by riotous laughter at his own joke. I just stared at him. Unbelievable. It was meant to be harmless ‘fun’ but laughing just because someone’s deaf is clearly not funny.

But worse than this was an advert in one of the free mags that plops on the doormat every month, and it keeps coming back to me, because it was so insulting. It was a page selling ‘invisible’ hearing aids, and the premise was that hearing aids are an unsightly embarrassment. The text included a reference to no one having to have ‘banana-like’ things in their ears. It was truly outrageous, at the level of childhood name-calling, insensitive, damaging and wrong in every way. The magazine disappeared into the recycling bin and I didn’t get the chance to complain, which is probably why it keeps bugging me.

But I think there’s a vast difference between such insensitive insults and life throwing some ridiculously absurd moments at you.

Hayley agrees. And she gives as good as she gets. “Enjoy your saddo night in, losers!” she smiles, and sashays out the door.

Please note image is not Hayley

Deaf awareness at Christmas

Day after Boxing Day, busy Christmas household

I knock gently on Hayley’s door and peer round to see her sitting up in bed, duvet pulled up to her chin, headphones on.

“Thanks Mum.” She smiles gratefully, taking the hot water bottle and paracetamol I give her.

She’s not ill, just suffering from a headache and taking some time out away from the madness.

If there’s one thing Hayley loves it’s Christmas. She’s very sociable, loves parties, adores her little nephew and young cousins and is addicted to chocolate – what’s not to love!

But over the years I’ve realised it’s not the easiest time for her, as deafness brings extra challenges when there’s so much going on and an onslaught of guests.

Christmas dinner

There’s the obvious increase in chaotic noise levels, with everyone chattering at once, making it hard for Hayley to follow. She often ends up with a headache from her hearing aids amplifying all the extra noise.

And many of the visitors are people we don’t see too often so they are not deaf aware, and this adds to stress and sense of exclusion for Hayley when she can’t easily join in.

One likely flashpoint is the dinner table. Mealtimes with a dozen or more people crowded round, all talking over the clatter and scraping of plates is a minefield for Hayley.

As well as the din she struggles to follow the pinball nature of the conversation ricocheting around the table, as well as not being easily able to lipread because she can’t see everyone’s face.

So she often misses bits or perhaps the main point. Someone – usually me, her dad or her brothers – will stop to explain to Hayley what she’s missed. It makes for an interrupted flow of conversation, which we’re used to, but visitors don’t always understand or show patience and consideration towards her.

Hayley often ends up feeling excluded, leaving her very frustrated and giving her self-esteem a bit of a hammering, even more so when she picks up on the exasperation of some guests.

We of course want to avoid these situations, but don’t want to make a big deal of it which would embarrass Hayley and make our visitors feel they’re being lectured, so it’s a tricky balance. We just tend to drop in deaf awareness tips casually and hope guests pick up on it and follow the example of the rest of us.

These seasonal gatherings of non-deaf aware visitors are also a prime time for over use of the ‘Oh it doesn’t matter’ response when Hayley says ‘pardon?’ It is a huge insult to someone who is deaf – the phrase is banned in our house – and likely to make her blood boil.

“If it’s important enough to bother saying to everyone else, then why aren’t I important enough to bother repeating it for me?” she quite rightly used to challenge her brothers.

They’ve grown up learning why it’s important and will repeat it to others who fall foul of the rule. Hopefully other guests catch on too.

One thing’s for sure, over the years things have got easier to deal with. We know that time out for a bit of peace and quiet is a good idea for keeping Hayley’s equilibrium.

And with Hayley and her brothers maturing, and perhaps deaf awareness messages getting through to the odd guest, the extra stresses and challenges of having a deaf child are definitely easing – shame I can’t say the same about the rest of Christmas!

Please note the image is not of Hayley.